Welcome to our News page! Every month, we will share important, interesting or newsworthy information about what’s happening with Bobby Jones CSF and what we feel you may want to know! Learn about our programs, upcoming educational and fundraising events, virtual support group & Ask the Expert meetings and research projects. We look forward to sharing it all with you!

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Platinum Transparency 2022

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Bobby Jones CSF is the only accredited Chiari organization to have met all 20 standards of charity accountability.

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Bobby Jones CSF is the only Chiari organization to receive a 100% score, earning the 4-Star Charity designation.

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2022 Top Rated non-profit with 111 reviews


Rare Opportunity to Attend Neurosurgery Meeting Online & Discuss Afterward! It’s the season of giving, and we want to give our supporters the gift of up-to-date research results in neurosurgery, which means you will be actively participating alongside Bobby Jones CSF in the research work we are advancing this December.

The annual conference of the AANS/CNS Joint Section on Pediatric Neurosurgery will run from Friday, Dec 2 through Sun, Dec 4 in Washington, DC. BJCSF understands the importance of patients and their loved ones having the most up-to-date information. To allow this, we are offering you virtual access to various sessions relevant to Chiari, syringomyelia and related disorders!

While patients and caregivers should not ask questions during the sessions, BJCSF will be hosting a targeted post-meeting Ask the Expert Q&A session to discuss everything that went on in the virtual conference! More information on this follow-up session to come– stay tuned! To learn more about the relevant conference sessions and to sign up for meeting access, please visit our website or register here.

Please note: Time to register is limited. Please sign up by Thursday evening, December 1st at 11:59PM Eastern Time to ensure you receive an access link.

Our virtual Ask the Expert meetings will resume in January 2023. This month, we offer a special opportunity.


We hold a support meeting for those who are HIGH SCHOOL and COLLEGE aged every last Sunday of the month at 5:00pm ET, for ADULTS every last Tuesday of the month at 7:00pm ET, and for PARENTS and CHILDREN quarterly, on the second Tuesday of the month.

The Children’s support meetings will take place just prior to the Parent’s meetings, at 6:30pm ET. A parent or caregiver must be present with the child at the children’s meetings. Registration is part of the Parent’s registration (there is an extra question to answer regarding whether you will be attending the child’s meeting at 6:30pm)

High School/College Support Meeting – Sunday, December 18th @5pm 

Adult Support Meeting – Tuesday, December 27th @7pm


2022 Chiari Research Award. The 2022 Bobby Jones CSF Award for Excellence in Chiari, Syringomyelia and Related Disorder Research will be awarded this coming Sunday, December 4th. We look forward to announcing this year’s winner, decided by a group of their peers at the AANS/CNS Joint Section on Pediatric Neurosurgery. We look forward to congratulating the researcher on their excellent work! This award is important to our efforts because it brings new researchers and clinicians to the study of Chiari, syringomyelia, and related disorders.

This award will be announced at the 2022 Section meeting, to which you are invited! See more in “Education”.


Thank you to all who attended and participated in this year’s Dinner Dance for a Cure. We had a fabulous evening filled with great friends, food and music. It was a special evening with a tribute to our dear friend and Bobby Jones CSF supporter, Brent Fiorucci, recognizing the 2022 Shining Star – Noah Forman and hearing from Nicole Turk as she shared her daughter, Nicole, journey with these disorders. Thank you to our 2022 Sponsors: Dr. Krystal Tomei and Dr. Brian Rothstein, The Hutnik/Miller Family, ENPAC/Tim Reed, National Development Council, A. Ripepi & Sons Funeral Home and the Shipley, Bard & Knapp Families.

Casino Night “Night at the Races
Saturday, March 4, 2023
Staten Island, New York

Bobby Jones Classic
Sunday, March 26 – Monday, March 27, 2023
Atlanta, Georgia
OUR NEW 2023 BOBBY JONES CLASSIC WEBSITE IS NOW LIVE. Secure your playing spots or sponsorships now!

The Calamity Jane Charity Cup Benefiting Bobby Jones CSF
Wednesday, March 29, 2023
Bobby Jones Golf Course
Atlanta, Georgia

Dinner Dance for a Cure “In Paris
Saturday, October 21, 2023
Twinsburg Hilton Garden Inn
Twinsburg, Ohio

unite@night & introducing unite4answers!

The 2022 unite@night events ended up doing phenomenally well! You all helped raise $232,000 for a record year. Thank you so much to everyone who helped to make a difference. Check out the top ten sites:

$103,896 – Vero Beach, FL – Tyler & Katie Guettler
$38,129 – Boca Raton, FL – Noah Forman
$11,299 – Chicago, IL – Chelle Cavo & Cathy Poznik
$9,167 – Austin, TX – Kerry Tillery & Misti Hair
$8,082 – West Grove, PA – Kristin Means
$6,903 – Richmond, VA – Pam Fenner
$6,467 – Charleston, SC – Julianna Weninger & Nancy Feracco
$6,437 – Acworth, GA – Jenn Riese
$5,283 – Atoka, TN – Amanda Harris
$3,233 – Cedar Rapids, IA – Lindsay Bohon

The 2022 recognition prizes are currently being mailed. We are still waiting on hats, hoodies and jackets. If you do not receive a package from our office soon, please contact

Bobby Jones CSF thanks everyone who participated and we can’t wait to see what you do in 2023! And speaking of 2023…

We introduce you to unite4answers and here is the new logo…

unite4answers is a collection of fundraising events around the country to help fund medical research and education programs that foster better answers. These events bring people together who are living with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos Syndrome and related disorders.

We invite you to join us as an Event Chairperson, participant or solo walker. If you are interested in chairing a unite4answers event, please register here.

2023 t-shirt design and National Sponsorship Form will be available soon.

Shop Amazon for the holidays and Support Bobby Jones CSF!

Thanks to you for shopping at or with AmazonSmile turned on in your Amazon shopping app! Your everyday purchases have generated over $11,000 in donations to Bobby Jones CSF!!

Shop right now by clicking the picture below and AmazonSmile will donate a portion of your proceeds back to Bobby Jones CSF at no additional cost! You can do good just by purchasing items you already need!

If you remember to go to AmazonSmile first, every time you shop, that’s awesome! For most people, the best thing to do is add a browser extension that automatically redirects you.

For Google Chrome, check out Smile Always.

For Firefox, check out Smile Redirect.

For Safari, check out KeepOnSmiling. These extensions will automatically redirect you to your page every time, so you will never need to remember to go to first!